Amplified Musculoskeletal Pain (AMP) A Guide for Families

Microsoft Word - AMP family handout non-CHOP 2014Amplified Musculoskeletal Pain (AMP) is a
very painful medical condition. It frequently
affects a limb (a foot or leg more commonly
than a hand or arm), but can cause pain
anywhere on the body. In fact, children can
have pain throughout most or all of their
bodies. Most children with AMP have constant
pain, although there are children who
experience intermittent attacks of pain followed
by periods without pain. Children may have
disabling amplified abdominal, head or chest
pain that is not musculoskeletal pain in the
strict sense. The pain all these children
experience, however, is much more intense
than one would normally expect because the
pain signal is amplified. These children have
real pain and are not exaggerating but the body
is amplifying the pain signal so it is generally
not alleviated by medicinal treatment.
What forms and other names does amplified
musculoskeletal pain go by?
names. We prefer the term amplified
musculoskeletal pain since it refers to the fact
that the body takes a mild pain signal and
makes it very painful, similar to when a guitar
amplifier takes a soft sound and makes it very
loud. Most of the names given to this condition
are related to where the pain is or to changes in
the skin temperature and color (autonomic
changes). Some of the many names used
include reflex sympathetic dystrophy (RSD),
reflex neurovascular dystrophy (RND),
(CRPS I & II), causalgia, Sudeck atrophy,
shoulder-hand syndrome, localized or diffuse
idiopathic musculoskeletal pain, neuropathic
disorder. Information in the literature and on
the Internet is quite confusing; most of it
applies to adults with specific syndromes,
especially the terms fibromyalgia and reflex
sympathetic dystrophy. The term sympathetic
can be mistakenly construed to suggest these
children are just looking for sympathy so the
newer term in the literature for reflex
sympathetic dystrophy is complex regional pain
syndrome.
long-term prognosis; children fare much better.
Therefore, we avoid using the terms RSD,
CRPS or fibromyalgia except for research
purposes.
pictorial representation of the overlapping
nature of the forms of AMP is shown below:
Forms of AMP – These forms overlap and a child may
have one or more at the same time or have a
reoccurrence with a different form than the original
presentation. Autonomic changes include coldness,
blueness, swelling or perspiration.
Intermittent
pain
What form of amplified musculoskeletal
pain does my child have? AMP has multiple manifestations and each
form can be named separately as shown above.
We use the term amplified musculoskeletal
pain (AMP) to encompass the spectrum of
these pain syndromes since they can occur in
combination or differently over time but are
treated the same. We use the more specific
terms in our research and for logistical
purposes. Your health care provider will
discuss your child’s specific AMP diagnoses
with you and your child after the evaluation.
We want to emphasize that all amplified pain is
severely painful and we doubt one type hurts
any differently or less severely than another.
How is the pain signal amplified? First, look at the figure to see how we normally
feel pain. Usually pain is in response to tissue
damage, such as stepping on a tack. The
damage sends a signal through the pain nerve
(1) to the spinal cord (2). The signal is then
transferred up to the brain (3). The brain then
recognizes the signal as being painful. In AMP
there is an abnormal short circuit in the spinal
cord (4). Therefore, the pain signal not only
travels up to the brain, but also goes to the
neurovascular (or autonomic – fight or flight)
nerves (5) that control blood flow through the
blood vessels (6). These nerves cause the blood
vessels to constrict thus decreasing blood flow.
The decreased blood flow deprives the skin,
muscles, and bones of oxygen and leads to a
build-up of acid waste products such as lactic
acid. This lack of oxygen and acid build-up
causes pain. This new pain signal also goes
across the abnormal reflex and causes a further
decrease in blood flow, leading to more pain.
Thus, the pain is greatly amplified through this
vicious cycle.
At times, the part of the body with AMP will
become cold, blue or purple, and even swollen
due to the decreased blood flow. Although no
test is specific for AMP, sometimes x-ray
studies show osteoporosis, a bone scan may
show decreased blood flow and an MRI can
show bone or soft tissue edema and muscle
wasting (atrophy). Rarely, the skin will
become thick and waxy (dystrophic), a
characteristic that gives reflex sympathetic
dystrophy part of its name.
What causes the abnormal reflex?
There are 3 major reasons the abnormal reflex
occurs: injury, illness, and psychological stress.
There may be other reasons such as age,
genetics, or hormones (80% of children with
AMP are girls). More research needs to be
done.
blood vessel (6)
The cause of AMP in approximately 10 - 20%
of children is injury. The majority of children
with post-traumatic AMP have a significant
specific injury such as a broken bone, crushing
or piercing injury, or surgery. The symptoms
develop immediately or within a few weeks
after the injury. Not uncommonly, as the injury
begins to heal, the pain starts and then
continues for weeks to months after the injury
has fully healed. AMP can mimic previous
pain experiences (e.g., feel like a broken bone,
even if the bone has fully healed), so it can be
thought of as a remembered pain that is then
amplified. This may be a factor in children who
have prolonged symptoms after a concussion.
What kind of illnesses lead to AMP?
Illness is an infrequent cause of AMP. Most
commonly it is seen in conjunction with
inflammatory illnesses of the musculoskeletal
system such as arthritis, tendinitis, myositis or
enthesitis. Other illnesses may be the initial
cause of pain; most are infections such as
mononucleosis, influenza, or gastroenteritis.
pain.
AMP?
psychological factors seem to play a role.
There is a whole host of possible stresses that
may play a role in causing (or perpetuating)
AMP. Notably, we use the term “stress” very
broadly. Stressors can be positive or negative,
big or small, and can include not just events,
but feelings and personality styles. Many of the
stressors that impact AMP are normal,
everyday stressors that all children face;
unfortunately children with AMP tend to
experience these stressors in their bodies as
pain, while other children may show their stress
in other ways. One major stressor we see in
many children is the psychological
consequence of having such severe pain. This
frequently is due to others not understanding
the nature of the pain (many friends, teachers
and family members do not believe the pain is
as intense as it is) and also having a delay in
diagnosis and multiple failed therapies. It is
very frustrating. Additionally, all change is
stressful, even a change for the good. Feelings
such as fear, worry and shyness are stressful; as
are the stresses of the events occurring in the
world. The most common stresses we see in
these children are those that arise from family
and school issues. Many families are
undergoing changes such as an older sibling
leaving home, new jobs, or marital issues.
School is more demanding; peer pressure,
social demands and social networking can be
quite intense. Many children do not like
conflict and have difficulty expressing their
opinions, asserting their needs, or saying “no”
for fear of upsetting others, which can also lead
to stressful situations and experiences.
Developmentally, most children with AMP are
gaining more independence and responsibilities
and may be going through puberty, which also
increases stress. Some children cope with stress
by keeping it inside and this stress can lead to
bodily symptoms including AMP.
Is the AMP all in my child’s head?
No, not at all. The pain is very real and very
intense. Even in those children for whom
psychological stress is a trigger or complicating
factor, the decreased blood flow to the area of
AMP causes the extreme body pain.
What are conversion symptoms?
nerve activity or inactivity, abnormalities in our
five senses, or other non-painful symptoms that
generally lead to dysfunction. The classic
example is a girl who suddenly goes blind after
seeing her dog get run over by a car. In such a
situation, the girl has no physical problems
with her eyes or her brain; however, the stress
of her experience disrupts the communication
between her eyes and brain resulting in the
experience of blindness, without true structural
damage. She is blind in that her brain does not
consciously process any visual information.
Most children with AMP do not have such a
dramatic event leading to their conversion
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the muscles (like a shaking or a clenched fist or
toes (sometimes mistakenly diagnosed as
dystonia), dizziness, lightheadedness, fainting,
POTS (postural orthostatic tachycardia
is based on reported symptoms only, rather
than on formal testing), shortness of breath,
non-epileptic events (or pseudoseizures),
memory problems, paralysis, numbness,
inability to talk, and visual difficulties (e.g.,
unable to read but can see). Sometimes the
conversion symptom is more of a problem than
is the pain and is therefore best addressed in a
treatment center with a focus on conversion
rather than pain. We call all of these symptoms
“conversion” so that there is no confusion with
seizures, muscle or nerve damage, or illness.
The vast majority of conversion symptoms
need to be ignored since calling attention to
them tends to make them worse. It is a
subconscious process and needs to be
addressed by working hard in counseling.
Physical and occupational therapy by skilled
therapists can also be very helpful. Many
conversion symptoms are relatively short lived.
However, conversion symptoms that are very
entrenched and hard to break generally bespeak
the fact that stress is playing a large role and
needs to be addressed before the conversion
will resolve. Whether it is short or long-lived it
is important to remember that conversion is
subconscious and not voluntary. Up to half of
children with AMP will have at least one
conversion symptom.
symptoms are frequently over treated by
physicians who think medication will help
when further testing and prescribing medication
actually can perpetuate the conversion
symptom. Likewise keeping the child with
conversion out of school also can perpetuate
the conversion and allows too much secondary
gain (secondary gain is the benefit one gets due
to an illness or symptom).
Are there any laboratory tests to prove it is
AMP?
other conditions present (for example, an
infection can alter the blood counts and
sedimentation rate). In some children a bone
scan or MRI can show abnormalities that are
very suggestive of AMP, but the results may be
normal. At times it is important to verify that
everything is normal but testing should not be
repeated unless the clinical situation changes
(such at the development of fever, new pain
and diarrhea in a child with amplified
abdominal pain may require investigation for
appendicitis).
What can be done to help my child?
It is most important that someone with AMP
begin to use his or her body in a normal way.
The abnormal reflex is broken by intense
physical and occupational therapy (PT/OT).
Some children are able to do this on their own
by exercising at home. Although it hurts to do
the therapy, it does not cause damage, and
some children are able to work through the
pain. Many children will need to participate in
an intense PT/OT hospital treatment program.
It just hurts too much for them to do it on their
own. The intense PT/OT program is usually a
daily out-patient (day hospital) program but
may require inpatient hospitalization,
need to be put in hospital include those who are
severely incapacitated, have a chronic medical
condition that requires closer monitoring during
treatment, need to wean off certain
medications, have marked pain behaviors such
as night time screaming, or need a behavior
modification program. Some insurance
patient therapy.
restore function as quickly as possible while
keeping the child safe from injury,
desensitization to the stimuli that invoke pain,
and evaluating the stressors that exist in the life
of the child.
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Phases of the treatment program: The first phase of the treatment program starts
with the diagnosis. There are children who can
work through their pain once they realize that
pain does not cause damage. This may be done
in conjunction with out-patient physical
therapy. Additionally, due to the emotional
aspect of chronic pain, psychological treatment
is helpful and should begin once the diagnosis
is established. Exercise helps desensitize the
pain nerves and stress reduction helps decrease
the reflexive sympathetic nerve impulses. It is
not uncommon for the pain to increase at first
or move or spread to different locations.
The intense PT/OT hospital treatment program
is the second phase for those who need it. Most
children will be fully functional at the end of
this phase but many will still have pain, though
the pain usually has started to decrease by the
time of discharge from the intense hospital
program. The third phase of the treatment
program is to maintain normal function (school,
sports, chores, socializing) and continue to do a
home exercise program with or without
psychotherapeutic counseling (depending on
third phase of the treatment program that
most children will resolve their pain. The
fourth phase of the treatment program is to
graduate from a formal home exercise program
and to have normal function without pain.
Some children (and families) may still need
ongoing counseling due to the emotional
aspects of AMP on their lives and mental
health.
program take?
center to center. In general one should plan 3-4
weeks on average. Occasionally, a child will
respond quickly and only need 1 or 2 weeks.
Likewise, a few will require many weeks. The
duration of treatment needed is impossible to
predict until the team has time to assess the rate
of your child’s progression.
It is important to realize that function comes
back first; normally the pain will take longer
to decrease. Some children will resolve their
pain during the intensive second phase of the
treatment program but most will do so during
the third phase; that is, once they are in school,
maintaining normal function, and perhaps
receiving counseling. The pain usually
diminishes gradually over the ensuing month or
two but rarely it takes many months. There are
children who have continue to have pain, but
almost all those who go through an intense
program remain functional.
phase of treatment?
It focuses on strengthening your child’s total
body and specifically on the areas of the body
that are painful or do not function properly. If
there are body areas that are painful to touch,
these areas are desensitized with rubbing and
massage. A home exercise program is part of
the treatment, especially over the weekends.
There should be scheduled appointments with a
psychologist for the child and parents and some
centers also involve patient support groups,
parent support groups, and the creative arts
such as art therapy or music therapy.
Are parents allowed in the exercise sessions?
Not in any of the centers we know of. In
general it is best that parents not be present.
Children often respond differently in a parent’s
presence. Additionally, it is important to help
children gain confidence in their abilities to
cope independently. While your child is being
treated we encourage parents and families go
about their usual activities as much as possible.
What about school?
centers. Some programs put school on hold
during the intensive second part of the
treatment program. Some children can benefit
from homebound instruction during the
evenings. Some programs incorporate a few
hours of school as part of the treatment
program since school is a large part of a child’s
usual activity. Regardless, the program will
work with school to help the child reenter
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overly stressed and overworked. Some
programs will obtain the child’s academic
records and other pertinent information to
determine if any academic tests or a
psychoeducational evaluation is indicated to
ensure that your child’s educational goals are
appropriate. It is a treatment expectation that all
children will return to school full time without
physical accommodations for pain or
conversion at the end of the intense second
phase of the program. Children who benefit
from academic accommodations due to a
learning disability, attention deficit, or other
learning need will keep such services.
Cyberschool is rarely an appropriate
recommendation post-discharge.
Creative art therapy such as music, art or
motion therapy helps your child gain coping
skills to help work through and decrease pain.
There are children who have a hard time
verbally expressing their feelings and emotions
and respond well to one of the creative arts
therapies. Music therapy employs music
assisted relaxation techniques to promote
positive mind/body connection through deep
breathing, progressive muscle relaxation,
imagery or mindfulness-based techniques.
Music therapy promotes self-expression
discussion. Art therapy is another way to help
your child express his or her feelings by using
various art techniques. The process of making
art focuses on self-expression and helps teach
healthy coping and wellness awareness.
What if the pain spreads or goes to a new
site while in the intense PT/OT program?
It is not uncommon for the pain to spread or go
to a new site while undergoing the intense
PT/OT program. It frequently is a good sign
when the pain moves since it means we have
connected to the autonomic nervous system
(e.g., one child with elbow pain developed knee
pain as the elbow pain resolved, then ankle pain
as the knees got better, then no pain). The
therapists will alter the program to include the
new areas of pain. Also itching occurs in many
children as they get better. This itching is
normal and does not require treatment.
Are medicines used for the pain?
No. Most patients take no medication to treat
AMP because it seems to hinder the retraining
of the nerves. This includes herbs, vitamins
and other complimentary treatments taken for
pain. Also, medication frequently causes side
effects in these children and has minimal, if
any, benefit. Other pain such as menstrual
cramps are treated as indicated but these, too,
can become amplified as can any source of
pain.
getting to sleep, staying asleep, or both. Many
people think that if we can improve their sleep,
their pain will decrease, but that is not the case.
Therefore, it is counterproductive to try to treat
sleep with medications since they usually do
not help and can cause significant drowsiness
and other side effects. Good sleep hygiene is
encouraged, especially while children are in the
intense PT/OT program. It is uncomfortable to
be awake all night and most children start
sleeping better once they start the intense
PT/OT program.
Sleep Hygiene:
drink much prior to going to bed
2. No TV, radio, phone or computer in the
bedroom (charge the phone outside the
bedroom at night)
4. All lights out
6. Create a structured bedtime routine that
includes relaxation prior to going to bed
7. Go to bed and arise at the same time
even on weekends and holidays
8. If you are not asleep 30-45 minutes
after getting into bed, get up and do a
quiet, boring activity, i.e., jigsaw puzzle
9. Do not disturb your parents – they
cannot help you sleep.
In simple terms you can explain that AMP is a
medical problem involving the nerves going to
the blood vessels. These nerves are overactive
and cause the pain just as an amplifier can
make a small sound painfully loud. The
treatment is a special series of therapeutic
exercises to…